Parental Informed Consent

Welcome, parents, to
this page that
describes my project, a project where yourchildren
will be the experts, and I’ll be helping them to tell their stories.

SO WHAT'S
IT ALL ABOUT?

My goals in
creating and maintaining this website are to:

educate
others to the
experience of growing up with 'differences'.

provide
age-appropriate information about chronic medical problems in order
that those who live with them might feel somewhat empowered and less
afraid, and that those without might learn that their friends and
classmates are most importantly children, and only secondarily, sick or
disabled children.

replace
the stigma that too often accompanies illness and disability with
positive
attributes associated with being 'special'.

reduce
the incidence of
teasing among children as it relates to illness and disability.

provide
children with some ideas
about how to treat one another in school, regardless of their
similarities or differences.

sensitize
teachers, parents
and health care providers to issues raised by children, the true
experts of the website.

offer
a
forum for children's stories, poetry and essays.

I’d like to
communicate
with your children over the World Wide Web to learn about their lives.
To learn about their going to school, and making friends, and living
with
chronic medical problems...And about whatever else they’d like to tell
me. You are welcome to help them answer the questions that I will pose
to guide them, but I'd like the content to come directly from the
children.

I've
looked
for themes that recur in the stories that I receive, and from them,
I've
developed an educational story for young children, as well as a number
of interactive pages throughout the site. I consider Band-Aides and
Blackboards
a work in progress, and hope to receive more narratives from children
as
"the word spreads". Their words are so touching and critically
important
to the project's goal: that of sensitizing others to what it's like to
grow up with medical problems.

WHAT WILL
YOU DO WITH ALL OF THE INFORMATION?

With
your permission, I will help your children (should they be interested)
tell their stories for inclusion on my website, Band-Aides and
Blackboards, with the hopes that their words willeducate both children and adults
to what it's like to grow up with medical problems. In addition to the
stories, I plan to use the site to

provide
children with age-appropriate
information about health.

sensitize
children and adults to the issues that accompany illness.

supply
on-line resources to address the needs expressed by you and your
children.

HOW WILL
YOU PROTECT THEIR PRIVACY?

I
will
require parental permission, as well as child assent, to any material
published from a child.

Although
information from
the children will not be anonymous if you permit the use of their
names, I will handle all of the data that
I receive in a confidential manner.

Neither
the identity of the children
nor any identifying information will be used unless you and your
children
prefer to be identified by name.

I will
suggest that email links be directed to you rather than to your
children in order that you might screen notes sent their way.

Anything
that the children
communicate to me will be used exclusively for the purposes outlined
above.

With
your permission and
understanding that their identities will be known, I will include
photos
of them at play, in the hospital, with their sisters, brothers,
friends,
whatever and whomever they'd like others to see! (Of course, if other
children are featured, I will require their permission and that of one
of their parents).

The
use
of their pictures
or any individual stories that they'd like published will of course
affect
the degree of anonymity afforded. I will be happy to include their
signed
or unsigned masterpieces, with your permission.

IS THERE
ANY RISK INVOLVED?

There is
a risk that children might feel some anxiety as they recall
memories and events related to their illnesses. My experience with
children
has been that rather than anxiety, they are excited about actually
being
able to teach their classmates what they deal with and how they learn
to live with it.

The
Internet is a powerful medium for good, but it can also be dangerous.
Should any child receive questionable or negative email, I advise them to let you
know, to let me know, and to definitely not answer the mail received. In the seven years since
the
inception of this web project, no child has notified me of receiving
any such mail. Conversely, I have enjoyed many letters telling me of
the incredible support your children have received in relation to their
stories.

Please
know that should you or your children request that their stories be
updated, edited or removed from the site, I will immediately do so, at
any time, for any reason.

HOW DO I
GIVE MY PERMISSION?

Take
a look
at the
kid's
consent form and then drop
me a line with your permission for your children's participation.
Please
let me know if it's OK for pictures to be published and for a link to
direct mail to you or your child. I can receive pictures as e-mail
attachments, or you can send them to me at the address below.
I hope that you'll be interested in the project, and will forward my
invitation to your children.

Please
call meat
718-960-8898if
you
have any questions or concerns.Thanks
for your assistance and your support of this endeavor!